wdwfan43 New Member - with PFO

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stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/17/2010 7:17 AM (GMT -6)   
Posted by wdwfan43 today @ 1:14 AM

I am a 49 woman was recently diagnosed with PFO (patent foramen ovale) and atrial septal aneurysm. I had a small TIA the Friday before Easter.

 
As part of the work up to find the cause of the TIA they did a echocardiogram which showed the atrial septal aneurysm, then a transcranial doppler bubble study. In the several weeks since my TIA I feel like I have had Cardiology and Neurology 101. Having an echocardiogram really didn't scare me when we got to the transcranial dopple bubble study I was terrified smhair   They basically inject bubbles (microscopic) in via IV and listen for the bubbles. I was a medical office assistant in my early 30's and I also give myself injections twice a week for Rheumatoid Arthritis and I can say the one thing I was always taught was to get the bubbles out of the syringe before you inject someone. Imagine someone telling you they are putting a bunch of bubbles in you (going through your heart and the veins in your head) it went against everything I was ever taught. I did get through the test it is by far the weirdest scariest test I've ever had (and after 18 surgeries I've pretty much had every test there is). Suffice it to say there were alot of bubbles I have a grade 5+ PFO and in this case the high grade isn't a good thing.  It is the highest grade PFO.
 
One more thing to note is I have migraine aura's (not the headaches) which some think are related to PFO's again not enough info to connect it to the PFO conclusively.
 
I have done SO much research on this. It is mind boggling to by asymptomatic for 49 years and all the sudden you find out you have not one congential heart defects but two. I saw my PCP who ordered the the echocardiogram then she contacted a cardiologist who ordered the bubble test. She put me on 325 mg aspirin right away. I've seen my neurologist who feels that I should be on Coumadin we are holding off until I have surgery #19 on my foot (life is fun...not so much shakehead ! My neurologist added 1200 of fish oil to the aspirin until my surgery is done then I will start Coumadin therapy. I have yet to see the cardiologist who I know is doing clinical trials on the closure of PFO's (he is also presenting his findings at grand rounds). I see him on May 26th. So I've been sitting all this time reseraching on my computer ever night everything there is to find about PFO and atrial septal aneurysm.
 
What I have found is that they really don't know what to do with us unless you are willing to be a guinea pig for the PFO closure for clinical trials. I've read everything from the Cleveland Clinic to the Mayo Clinic (and everywhere in between) and the current recommended treatment is medical management not PFO closure. The devices they speak of in the articles I've read for closure haven't been approved by the FDA yet (all still in clinical trials and they are screaming for more people to be in the clinic trials). The Amercian Heart Association, American Stroke Association and the American Neurology Association all recommend drug therapy (anti-coagulants, Plavix) for treatment unless more than one stroke has occured. In my case I had a TIA. The recommedations I found were on the Mayo Clinic website from the above associations.
 
So what to do. My case is complicated further by the fact I have an autoimmune disease (rhematoid arthristis) so my my immune system is suppressed by injections I give myself twice weekly to prevent further joint damage from the RA. I also suffer from many other medical issues.  I can say that I'm not on board with closure since my immune system is compromised. There is a risk of endocarditis if they do the PFO closure and that would be assuming the could even do it in my case. I happen to be antibiotic resistent as well so even though they recommend theraputic antibiotics for six months following PFO closure not so comforting for me who has a compromised immune system.
 
At this time I am going to choose medical managment even though I haven't seen the cardiologist. I discussed it with my neurologist and for all the same reasons I've listed he feels it is the best course of treatment for me. Coumadin does come with it's risks but it has been around alot longer than the devices they are using for PFO closures. In addition not one device I've read about is FDA approved for PFO closure. Also given all my surgeries I just don't have it in me to be in a clinical trial unless it is a clinical trial tracking medical management of this condition with anti-coagulant therapy.
 
One thing that does occur to me is that my TIA happened the first part of April we are now in the middle of May. The results of my echocardiogram were done mid-April I had my transcranial doppler just over a week and a half ago. The cardiologist ordering these and getting my results has seen the grade of PFO (my neurologist has also seen the results). If I was in imminent danger I would like to think a responsible cardiologists/neurologists would have contacted me to do something more immediately.
 
These are scary and frustrating congenital heart defects. I'm frankly surprised there isn't more research or data on how to care for patients who have these heart defects. I have had alot of surgeries and medical issues but this is the scariest by far. Up until I was diagnosed with rheumatoid arthritis I was able to excersise. I've never had a cardiac symptom in my life. I ran cross country in high school running between 5 and 10 miles everyday never a problem. It is hard to wrap your head around having two heart defects all your life and not knowing until you are 49 years old.
 
I'm interested talking with others who have my conditions. It would be great to find a way to start a support group for people with these heart defects.
 

JaniceRenee
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/21/2011 11:14 PM (GMT -6)   
wdwfan43,

i too have RA, and so i prefer not to sit at the computer and type. but i am happy to talk with you over the phone, if you like.

here's a little bit about me. i was originally diagnosed with a PFO and ASA. after a small stroke, it was determined i had an ASD instead.

i worried about how my RA body would do with surgery... but the transcatheter percutaneous procedure was so incredibly easy, compared to open heart.

my defect has been closed now for 6 years.

i've been the healthiest i've ever been.... until recently when i developed pulmonary arterial hypertension, which you can develop with RA or an ASD.

anyway, i am happy to talk with you further.

Post Edited By Moderator (stkitt) : 9/4/2011 8:31:56 AM (GMT-6)


Apatchie
New Member


Date Joined Sep 2011
Total Posts : 14
   Posted 9/4/2011 6:38 AM (GMT -6)   
Greetings wdwfan43, I posted a thread today about my experience with PFO. I had previously had a stroke and after they found PFO, I opted for medical management. I later suffered multiple TIAs and with no obvious source they considered the PFO to be the likely culprit.

I have a desk job, and also complications from previous surgery that cause lymphedema in my leg, putting me at high risk for blood clots. The risk of clots increases as we age, but normally tiny clots and debris from your legs will be "filtered out" in your lungs. With the PFO though, they can be pumped into the wrong side of the heart and go straight to the brain. Due to the multiple TIA's they decided that closure was reasonable and it was allowed by my insurance company as a medically necessary procedure since the medical management had not prevented the TIAs.

I see that your original post was back in May of this year so I hope that in the intervening months your docs have been able to help you. Best wishes for improved health!
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